Lifestyle and Community Life of Emerging Adults and Adults with Spina Bifida
Project Description:
Improvements in medical treatments and advances in technology and science have contributed to extending the lifespan of individuals with special health care needs and disabilities . It is now estimated that 90% of individuals born with disabilities, including those with spina bifida, will live into their 20s (Newacheck & Halfon, 1998). As greater numbers of children and youth with disabilities reach adulthood, it becomes incumbent to focus attention on the unique challenges this group of individuals face as adults. As national data reveal, adult outcomes for individuals with disabilities are discouraging. The purpose of this study is to examine the lifestyle a nd community outcomes of adults with spina bifida, 21 years and older. This investigation will provide insight as to the effect having and managing spina bifida has on lives of adults pertaining to a number of parameters considered key lifestyle indicators of adulthood. In person interviews that will be audiotaped will be collected from individuals enrolled in the study. Data gathered will be analyzed using descriptive statistics (frequencies).
Responses to open ended questions will be summarized and coded into categories when possible.
Keyword(s):
adults with disabilities, special health care needs, transition, outcomes
Core Function(s):
Performing Research or Evaluation
Area of Emphasis
Education & Early Intervention, Health-Related Activities, Employment-Related Activities, Housing-Related Activities, Transportation-Related Activities, Recreation-Related Activities, Quality of Life
Target Audience:
Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English
Primary Target Audience Geographic Descriptor:
National, International
COVID-19 Related Data:
N/A
